Art teacher, gallery owner reclaims life from lupus

Nikki Gamer

Monday

Feb 23, 2009 at 12:01 AMFeb 23, 2009 at 11:01 PM

On the night of her 48th birthday, Debra Highberger celebrated in style among friends and art students who had come together for a lupus-research benefit, a most personal cause for the Marblehead, Mass., resident and Acorn Gallery co-owner.

On the night of her 48th birthday, Debra Highberger celebrated in style among friends and art students who had come together for a lupus-research benefit, a most personal cause for the Marblehead resident and Acorn Gallery co-owner.

Highberger, who suffers from lupus, looked lively, happy and healthy. She did not look like someone dealing with a painful chronic disease.

“I was feeling great — it was probably the best I’ve felt in years,” she said after the event held in her honor.

Lupus is an autoimmune disease that can affect various parts of the body. Those with the disease often experience flareups that can last for long periods of time and are characterized by pain, heat, redness, swelling and the loss of function of body parts.

At the moment, it is a disease with no cure.

Highberger, a painter and an art teacher, was diagnosed with lupus several years ago.

Living with lupus

“One day, I was under stress, and within three weeks I was completely engulfed in it,” Highberger said. “Lupus can attack a lot of different places, but for me it was the joints — my whole body swelled.”

Because of her disease, Highberger had to readjust her entire life.

The painter, who had her artwork showing in galleries across the country, had to pull out of those venues in order to focus on her health. Her feet swelled to double their normal size, and her palms swelled so much she could not recognize her hands. She could not wear her shoes anymore and instead had to have special ones made to fit her feet. She began to walk with a cane, with the assistance of wrist braces, and when it became so unbearable, she would use a walker.

“It was really, really tough in the morning,” she said. “I had to have aides to help get me out of bed to walk. ...There was a point for about 18 months where I only had two hours of sleep a night — and that’s not really good for healing. Everything hurt so much I couldn’t be in one position for more than 15 minutes at a time. It was torture — it really was.”

But the artist refused to give up painting, and like the French artist Renoir, she continued to work on her art by strapping paintbrushes to her wrist braces. She would paint on the weekends, in the afternoons, because during the afternoons she would feel better.

“Your identity completely, completely is destroyed,” Highberger said. “The person you were physically is completely gone. The pain was so bad, I would find myself rocking and humming and not knowing it.”

Help at Brigham and Women’s

Highberger was finally able to gain control over her disease through treatment at the Lupus Center at Boston’s Brigham and Women’s Hospital, where doctors aggressively treated her symptoms and helped get her healthy again.

“I never thought I’d ever get back, but now I’m completely back,” she said.

Highberger remembered feeling completely at ease the day she first walked into the center. She loved that the facility had raised seats, something that helps the comfort level of lupus patients.

Highberger said the very first doctor she saw understood her pain right away.

“He physically put his arm in mine and walked me to the examining room — I just wanted to cry,” she said.

Doctors at the Brigham and Women’s center gave Highberger the lupus diagnosis officially.

“I just knew this is where I needed to be,” she said. “Within six months, he had me 75 percent back, and here it is almost two years later, and I would say I’m 95 percent back.”

The need for fundraising

Highberger said the entire community, especially her art students, have been incredibly supportive of her fight against the disease.

“This community helped me through this, and it was the youngest members of this community,” Highberger said.

Her art students helped organize the fundraiser, one of several lupus benefits held this year. Her high school students raised $1,000 during a haunted house fundraiser in the fall, and the students are also in the process of organizing a masquerade ball, and a carwash and yard sale.

“Deb means a lot to me,” said Swampscott resident Fiona Buchanan. The 16-year-old took part in the night’s fashion show and donated a piece of her artwork towards the cause.

But perhaps the biggest gift of all came from Highberger’s friend and former art student Jean-Marc Dykes.

This May, the 21-year-old will ride his bicycle 4,000 miles from Vancouver, British Columbia, to Marblehead, to raise awareness about Lupus. He thinks the ride will take him between 40 and 60 days, and he hopes to stay with different people along the way.

“It’s something I’ve always wanted to do,” Dykes said. “She’s a cyclist — so it’s in honor of her… She’s been like a mother figure to me.”

All donations made during the town’s various lupus benefits will be made in honor of the “JM Lupus Ride for a Cure.”

“He’s always looking out for me,” Highberger said about Dykes. “In fact, they all are, all the kids.”

As for Highberger, she is excited for all that is ahead, including raising more money towards finding a cure to a disease that has become such a large part of her life.

Highberger also hopes to get back to her old routine sometime soon.

“Hopefully, I’ll be able to start riding again because it’s something I’ve always been able to do,” she said.

For more information about JM’s bicycle journey, including how to donate to the cause, visit www.lupusride.com.

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